Category Archives: Uncategorized

August seems to be the month for visiting the hospital. I was diagnosed August 2019. I got my feeding tube plumbed in August 2021. Recently I visited the hospital for my first serious choking incident, August 2022. I accidentally inhaled chicken instead of swallowing it, which they say anyone can do, MND or not. ButContinue reading “Day 1101 – Near Death By Chicken”

Some of the feedback from my previous post showed that many of you found it upsetting or that it made people angry.  I think it’s really important to share my journey, warts and all. I don’t want to sugar coat anything. It’s also therapeutic for me to write down how I’m feeling. So I hopeContinue reading “Day 1020 – Birthday’s, Blood clots & Tears”

—- I have lost my independence and any future and then I was stripped of my privacy over night. It’s been a difficult time.—— I have had to get used to the fact that I can’t go to the toilet unless someone takes me. I have had to accept that I need someone to cleanContinue reading “Day 950 – Just ask ME!”

In general, quality of life (QoL or QOL) is the perceived quality of an individual’s daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual’s life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual’s well-beingContinue reading “Day 895 – Quality of Life”

MND is a cruel disease but nothing can prepare you for making friends and losing them. There’s so many of us across the UK who are connected by this disease. We support each other and you begin to feel part of a community of people going through the same things as you. You start toContinue reading “Day 828 – Losing Alan”

The feeding tube saga continues… Eight weeks on from my feeding tube operation, I had just recovered from a really painful infection in the tube site. I started to notice small, black, fluffy spores forming inside the tube itself. So I contacted the dietician who came out to have a look at it. She claimedContinue reading “Day 820 – I made it to 32!”

So I’m now part of the feeding tube club. I decided to go ahead with the operation and I’m all plumbed in now incase I have problems with eating and swallowing in the future. If you have read the previous blog posts on the Rig dilemma, you will be aware of all the concerns IContinue reading “Day 757 – Hospital ordeal”

Yesterday was the two year anniversary of my diagnosis, I wanted to share with you the effect that MND has had on my body. A friend of mine has kindly put together a short video briefly showing life before MND and then how it has taken over and stripped me of my independence in justContinue reading “Day 732 – 2 year Diagnosis Anniversary”

I don’t know how many more blog posts I will be able to write. I am now more or less paralysed from the neck down. I have movement in my legs and arms but nothing is functional or productive. I can’t actually do anything for myself. I can speak, eat and swallow but I needContinue reading “Day 635 – To RIG or not to RIG? Tough decisions”

I often envisaged as my mum grew older, if she needed help I would move near by or move her into my spare room. I never envisioned that she would be moving in to take care of me and be my primary carer. We’ve both had some difficult times over the years but she alwaysContinue reading “Day 545 – Who will… when I’m not here?”